My Child Has a Diagnosis. Where Do I Start?

Finding out that your child has a disability or special health-care needs can change your world in a moment. You might be feeling like someone just sucked the wind from your sails. You might be filled with anger and grief. Or you might feel a little relieved to finally have a diagnosis. Maybe you were in denial about your child’s diagnosis and are just now ready to move forward. All of these emotions – and more – are perfectly okay. Give yourself permission to feel your feelings without judgment. Begin where you are, take a deep breath, and come back to this page as much as you want and need – on your timeline.

Early Intervention for Birth to 3 Years of Age

Your child’s special health-care needs or disability might affect how and when they reach developmental milestones. Early intervention gives children a big boost to help them grow. If your child is an infant or toddler, it is very important to ask for early intervention services. You can learn more about this on the Early Childhood Intervention (ECI) page. Do not delay; ask for your child to be evaluated for these services.

Help for the Newly Diagnosed Child (All Ages)

Other Important Things to Know

Financial concerns: You might wonder how to plan for the costs of medical care for your child. Learn more about family financial planning and steps in the process on our Financial Concerns page.

Medical planning for your child: Your child might begin seeing several specialists and therapists. Having a plan in place will help everyone involved in your child’s medical care understand the bigger picture and how you want your child treated by the medical community. Learn more about medical planning on the Medical Home page.

This page has a lot of information for you to think about. You may want to move forward a little bit at a time, and that’s okay. The website will be waiting for you when you are ready to read more.

Questions to Ask Yourself – and Your Child – When Creating a Vision for the Future

Where do you see your child in 10 years?

What life milestones do you hope your child has reached in 5 years? 15 years? 25 years?

Picture the best day for your child. What does it look like? What can you do so you have more of those days?

Picture the worst day for your child. What does it look like? What can you do to help your child and your family get through it?

Top Five Things You Can Begin to Do Now That Will Help You and Your Family

Create a vision and plan – one for your child and one for your whole family.

Understand your child’s diagnosis. Do the research to learn more about it and the terminology that goes with it. Don’t be afraid to ask questions. The more informed you are, the more empowered you will be to help your child and your family. Learn more about how to talk to your child’s doctor.

Create a care notebook to keep your child’s medical records organized and in one place. Take it with you to all doctor and therapist visits. Learn more about organizing your medical records.

Reach out to other parents. Remember that you are not alone and that other parents have experienced this too. Join a support group or online forum with parents of children with the same or similar diagnoses. Learn more about how to connect with other parents.

Take care of yourself and your family. Your child is not defined by a diagnosis. It is just a part of who they are, like the color of their hair or eyes. Nurture yourself and your relationships. This will go a long way in helping all of you cope and thrive. Learn more about self-care.